sleeping 15 hour or more a night, falling asleep during the day.

Elaine, I'm sorry to have to say this, but you have to speak up. The doctor evidently doesn't know the full extent of the situation. You know your DH should not be driving.

My cousin lived in Independent Living for several years. Several of the residents had personal attendants that they paid to attend them for a few hours. Can you hire someone to help you? Her place also had a shuttle bus to take residents to the nearby shopping center. Does your place offer transportation? Can you apply for county senior transportation? The manager should have references for senior transportation.

Why is he falling? Falls are a big problem. You can read online about fall prevention. But also consider checking all meds and supplements for side effects and interactions, because medications can be a cause of falls. Does he have a blood pressure problem? Is he a diabetic?

If you have C-diff, or think you have it, I don't think you should be going to the dining room or be near food area. Several of your fellow residents are probably also immune compromised. Read about the isolation techniques for C-diff. Does your doctor have a portal to contact for questions? Or is there an urgent care nurse for telephone consultation? You need some professional advice. You have to be very carefull to avoid further complications.

Iris

Thank you for sharing more of your story, Elaine. I feel like we are kindred spirits because I too have multiple illnesses, including systemic lupus, heart failure, hypertension, spondylitis, and cognitive impairment, although I am ambulatory. But I live alone and I do not have any support, I have to do everything myself. Even though I do speak up, my doctors seem to have limited understanding of what I am dealing with. This is why I rely so much on the wonderful members of these message boards for suggestions.

I had considered moving to Independent Living, like my cousin, until COVID came along and made those places like death traps because COVID patients were being returned to live amongst the frail residents. So I decided to take my chances on my own home, where I could control who came into my home and who got close to me. I'm still here, but I am making plans for if and when I cannot walk up stairs, because I am on the second floor.

Back to you and your DH. Falling after sleep could be due to sleep inertia (not fully waking up), orthostatic hypotension, low lighting, and especially cardiac arrhythmia. If he thinks he might have a ventricular arrhythmia, that is very dangerous. He needs 24 hour monitoring, formerly called Holter monitoring. I just spent thirty days being monitored for suspected atrial arrhythmia, fortunately I was deemed to be okay. This is now called event monitoring, and was done over the internet. Episodic visits to the ER probably won't catch it. You might want to bring this up to the cardiologist.

Where I live, city buses and vans for the disabled are capable of transporting wheelchair patients because they have ramps and paraphernalia to attach to the vehicle. If your medical plan is paying for your expensive treatments, are they not also supposed to provide transportation to medical appointments? I'm just wondering.

Where my cousin lived in Independent Living seemed to be like Assisted Living to me, because they provided so much. The only thing they did not supply was medication monitoring. What benefits would you have if you moved to Assisted Living versus having a paid caregiver in Independent Living? Eventually my cousin received in-home care 24/7 with paid caregivers for a year or two because she had developed dementia.

Another thing I have learned is to ask around about my situation. Your doctors might have a social worker or nurse who can help you strategize. Also, don't forget the Care Consultants at the Helpline, they can have good suggestions.

Best wishes to you Elaine. Please keep us updated on how you are making out.

Iris

“I think we should move together to Assisted Living, which is part of our campus here. But he doesn't want that, either. sigh.”

Sometimes you just have to make the decision for both of you. He has dementia. You cannot rely on what he wants.
You know the current living situation cannot continue much longer. It is better to figure out the next step now. Now you will have more options, than you will when a crisis occurs. You are not going to be able to rely on him for much longer. You need to figure a way to move forward.

Your campus is both independent and assisted living. Many with this configuration have a social worker on staff. If there is, could you enlist the worker to initiate the move? DH can think the idea came from the worker, not you.

This is disturbing! The Zio monitor is supposed to detect 99% of arrhythmia within a 2 week period. Perhaps he didn't have arrhythmia during that period. My monitoring was done by Phillips, for 30 days. How is your DH doing now? Did he have an ablation? Is he on meds?

I have a similar story. I have been complaining of shortness of breath for over two years, was being diagnosed as having asthma, and only just recently was diastolic dysfunction/ heart failure mentioned. Actually it wasn't mentioned at first. The cardiologist gave me a new medication to try, and I Googled it while I was still in the exam room, and discovered it was for heart failure. Then I had to get the nurse to bring him back so he could tell me what was going on with my heart. I don't like feeling like my doctors are not focused on my issues.

Iris

@Iris L. wrote:

This is disturbing! The Zio monitor is supposed to detect 99% of arrhythmia within a 2 week period. Perhaps he didn't have arrhythmia during that period. My monitoring was done by Phillips, for 30 days. How is your DH doing now? Did he have an ablation? Is he on meds?

It is possible that he did not have arrhythmia while wearing either monitor. However, he had been abruptly falling asleep in his chair on an almost daily basis in the weeks leading up to and after the stroke. He was also having frequent episodes of falling backwards in the months prior. DH also tended toward Bradycardia, with pulse readings in the low to mid-40s. At the cardiologist appointment after the stroke, the doctor was rather dismissive, generally suggesting that that is what we should expect at DH's age (then 91yo). Eliquis was added to his regimen of BP medications. Ablation was not mentioned. A pacemaker was ruled out because his pulse was not quite low enough. He was given a "Heart failure" diagnosis.

He began outpatient physical and speech/memory therapy, and was doing very well with PT. He had progressed to where he could walk without even a cane for short distances. His stroke had been in the area of speech/swallowing and memory and had been considered "tiny" (in the words of the neurologist).

The A-fib episode on Oct. 1 was the beginning of the end for DH. After his heart was stabilized, he was sent home with an indwelling catheter after 5 days in the hospital. Six days later his catheter became completely clogged in the middle of the night, and home health care told me to get him to the ER via ambulance. After a stint in the hospital, he was released to rehab with a suspected UTI. The rehab hospital refused to listen to me and order a culture, so the UTI was untreated and got worse. I had no way to get him to an outside appointment. He was released from rehab to his first personal care home on Oct. 24, very weak and barely able to use a walker.

On Oct. 29, he fell backwards, hitting the toilet. He fell again that evening and was found on the floor by an aide. An ambulance was not called until the next day when he appeared to be in pain. He spent 11 days in the Trauma ICU at a large hospital in the city. He had broken 7 ribs, had internal bleeding, pneumonia in one lung, electrolyte imbalance, and a severe, drug-resistant UTI. He required IV antibiotics and electrolytes and a pigtail chest drainage tube. Discharged to a different rehab where he stayed until the day before Thanksgiving and then was discharged to the ALF (with enhanced care) where he now resides. This ALF was the ONLY place in the metro area that would take him. (No SNF would return my phone calls, despite being private pay, except one that wanted $15,000/mo. We do not qualify for Medicaid.)

While in rehab, hospice was recommended, and he entered hospice care upon moving to the ALF. He was taken off nearly all of his medications and supplements, remaining on Doxazosin (has BPH and a latent prostate cancer tumor) and aspirin (as blood thinner). He is now in Stage 7 ALZ. He is grotesquely swollen with edema and ascites from the diaphragm down. Lasix was added about 3 mos. ago as comfort care due to the swelling, but it is rapidly losing effectiveness. No shortness of breath. He is not on O2 yet, with pulse/ox readings in the 90s once his hands are warmed up. His hands are turning blue, and he is losing sensation in his fingers. He is starting to have contracture of his hands and arms, and his legs are locked straight. He is confined to a Broda chair with his feet elevated at all times, using a Hoyer lift for transfers. He is on pureed food and thickened liquids due to dysphagia. He can't be weighed, but has lost nearly all the flesh on his body. He will turn 93 on Sep. 13, God willing.

I realize this is way too much information, but I wanted to provide context. And in a strange way, it is cathartic to share the ugly reality of DH's (and my) journey through ALZ with co-morbidities.

Thank you for your concern. This was not the standard of care prior to Covid, but that is another rant for another forum.

He cannot remain in hospice care while receiving PT or OT. At this very late stage, hospice is essential.

He is in an assisted living facility, in their special needs wing. To put it very bluntly, this is where dying residents are warehoused. There are extra charges for increasing levels of service. This type of treatment falls under OT for billing purposes, so is not allowed by Medicare for hospice patients. Even if the facility staff was allowed to perform this service, facilities are staffed at the state minimum and aides simply do not have time (or to be honest, the inclination) to do this type of care. I do what I can to help him by passively moving his arms and straightening and rubbing his fingers, but I can go there only four days a week.

Yes, bedridden patients should be rotated every two hours to avoid pressure sores. It does not happen. DH developed pressure sores from sitting all day in one position in his Broda. An order was issued by the hospice doctor that he be put in bed after lunch every day, but it took weeks of my advocacy to get it actually carried out daily. Our very experienced hospice nurse tells me that this is the ugly new reality in the post-Covid world of healthcare.

It sounds as if hospice care isn’t much help. Moving him to prevent bed sores sounds like a very basic aspect of comfort care which he isn’t receiving because it isn’t allowed by Medicare for hospice patients. So that means that you couldn’t hire someone else to move him because he would be kicked out of hospice?

I'm sorry to read all of this.

Iris